Palliative care concept

Through palliative care, we change the role of a patient into a whole human being.
Through palliative care, we transform the stages leading to death into times filled with life

1. Palliative Care Concept d r. Siti Annisa Nuhonni, Sp . KFR ( K ) Physical Medicine and Rehabilitation Department Dr. Cipto Mangunkusumo Hospital Faculty of Medicine, University of Indonesia Makassar, February 16 , 2019

2. DEFINI TION Palliative care is all active actions to alleviate the burden of sufferers, especially those with life-threatening illness . A ctive actions include relieving pain and other complaints, as well as improv ing the psychological, social and spiritual burdens. AIM To relieve suffering s in order to maintain and improve the quality of life at the final stage and patient could die in dignity PERAWATAN PALIATIF ‘ Paliative Care ’ (WHO, 2000)

3. A ffirms life and regards dying as a normal process No intention to hasten or postpone death Relieve pain and other distressing symptoms Maintain psychological and spiritual balance Help patient s to live as active ly as possible until death Team approach for both patient and family to overome burden, including bereavement counselling Basic pattern of palliative services According to WHO

4. Although sometimes described as ‘ low-tech and high touch’ , palliative care is not intrinsically against medical technology. Rather it seeks to ensure that compassion and not science is the controlling force in patient care. High tech investigations and treatments are used only when their benefits clearly out-weigh any potential burdens.

5. Distribution of Palliative Care Needs for Specific Illness in A dults and C hildren Global Atlas of Palliative Care at the End of Life (World Hospice and Palliative Care Association, 2014)

6. Sankaranarayanan R, Ramadas K, Qiao Y. Managing the changing burden of cancer in Asia. BMC Med. 8 Januari 2014;12:3.

7. Sankaranarayanan R, Ramadas K, Qiao Y. Managing the changing burden of cancer in Asia. BMC Med. 8 Januari 2014;12:3.

8. Palliative Care S ervice Priority: CARE There is a change in principle - from cure to care - from interventions to prevention and rehabilitation - from fulfilling the desire to the principle of effective & efficient Based on rational considerations of medical, psychological and social aspects

9. Those Who are Involved

10. Palliative Development in Indonesia

11. FOUNDATION OF PALIATIVE CARE LAWS IN INDONESIA Decree of the Minister of Health Number : 812 / Menkes / SK / VII / 2007 about Palliative Policy In early 2019 a Minister of Health Regulation will be issued on the National Guidelines for Palliative Services

12. Hospital Care Home Care Hospice Care Samsuridjal Djauzi dkk, Perawatan Paliatif dan Bebas Nyeri pada Penyakit Kanker, Panduan untuk Petugas Kesehatan, RSKD Jakarta 2003 Palliative Care Organization at the Hospital, arranged in the form of an Integrated Palliative Services Team P alliative Care Flow In every palliative service facility, it is necessary to have professional human resources in accordance with their competencies.

13. Barriers in Developing Palliative Care Lynch T, Clark D, Centeno C. Barriers to the Development of Palliative Care in the Countries of Central and Eastern Europe and the Commonwealth of Independent States. J Pain Symptom Manage. Maret 2009;37:305–15.

14. Development and C hallenges of palliative care in Indonesia The Ministry of Health of Indonesia has predicted around 240.000 new cases of cancer per year, with 70% of the patients already incurable at the time of diagnosis R ecently , most cancer patients eventually died in hospital, suffering unnecessarily due to a high burden of symptoms and unmet needs of the patients and their families Putranto R, Mudjaddid E, Shatri H. Development and challenges of palliative care in Indonesia: role of psychosomatic medicine. Biopsychosoc Med. 2017;

15. Development and C hallenges of palliative care in Indonesia Palliative care has been improving since 1992 in Indonesia and developed a palliative care policy in 2007 that was launched by the Indonesian Ministry of Health. Currently, palliative care services are available in several major cities where most of the facilities for cancer are located. Putranto R, Mudjaddid E, Shatri H. Development and challenges of palliative care in Indonesia: role of psychosomatic medicine. Biopsychosoc Med. 2017;

16. In 2016, the Ministry of Health issued a national standard for cancer palliative management and, as stated previously, morphine is only available in the hospital setting . Challenges r elated to government policy, lack of palliative care education, attitudes of health care professionals, and general social conditions in the country. Putranto R, Mudjaddid E, Shatri H. Development and challenges of palliative care in Indonesia: role of psychosomatic medicine. Biopsychosoc Med. 2017; Development and C hallenges of palliative care in Indonesia

17. Sumatra (4 ): Banda Aceh, Medan, Padang, Palembang Java (7): Jakarta, Bandung, Semarang, Yogyakarta, Surakarta, Surabaya, Malang Bali (1): Denpasar Sulawesi (2): Manado, Makassar Kalimantan (1): Banjarmasin Pathology Centers in Indonesia

18. Indonesian Cancer Foundation takes part in

19. Strategic Approach in Medical Rehabilitation Services ADL QOL QOL ADL Non Pal liative Palliative

20. Quality of Life ‘Quality of life is what a person says it is.’ Quality of life refers to subjective satisfaction experienced and/ or expressed by an individual; it relates to and is influenced by all the dimensions of personhood – physical, psychological, social and spiritual

21. Physical concerns (symptoms, pain) Functional ability (activity) Family well being Emotional well being Spirituality Social functioning Treatment satisfaction Future orientation Sexuality/intimacy (including body image) Occupational functioning Dimensions of Quality of Life Doyle, Hanks, Mac Donald Pall, Med – 1995 – pg 64

22. Problems F aced by P alliative P atients (HHC-YKI)

23. SYMPTOMS AND SUFFERINGS OF PALLIATIVE AND CANCER PATIENTS Pain : 68,9% Gastrointestinal tract problems : 60,0% Skin problems : 55,6% (open wounds, stoma, decubitus ) General weakness : 53,3% Respiratory problems : 51,1% (cough, breathlessness) Weakness of limbs : 51,1% Urinary tract problems : 42,2% Confusion : 35,5% Dharmais Cancer Hospital, 2001

24. HOMECARE PAIN NUTRITION MEDICAL REHABILITATION 75,5% 68,9% 64,4% 57,8% Dharmais Cancer Hospital, 2000 PROBLEMS IN THE FAMILY

25. Palliative Care Team Profession of every team member is known for its scope of work These professionals are merged on the same team Together they compile and design the ultimate goal of treatment through steps in several long term goals

26. Palliative Care Team ... 4. If necessary, leadership can be divided among team members, depending on which priorities are needed to be executed 5. The team itself is the driving force of all the patient's activities 6. Interaction process is the key of success

27. ? Is homecare a new phenomenon

28. Palliative C are at H ome Concept : not different Need total c ooperation and family’s role, because the main control of care is in the hands of the family

29. DIFFICULT TIMES The relay process of “ handing over ” homecare from medical personnel to the family Needs well planning and precise details Mentally and physically ready Needs knowledge and skills to tend the patient Needs the facilities to be prepared at hom e Ease of medical emergency services Ensure ease of communication with nurses and doctors Palliative C are at H ome ...

30. Walsh 1987 : The choice of home care depends on different cultures The decision of home care cannot be forced Families and patients have the right to choose the best and be able to do it Palliative C are at H ome ...

31. Caregiver

32. Homecare is very complex and not easy to be applied Caring for a palliative patient is new to every family Caregiver

33. Quality of Life model applied to family caregivers Physical well-being Fatique Sleep disruption Nausea Appetite Constipation Aches/pain Social well-being Isolation Role adjustment Financial burden Role/relationships Affection/sexual function Leisure activities Burden Employment Psychological well-being Anxiety Depression Helplessness Difficulty coping Fear Useless Concentration Control Distress Spiritual well-being Meaning Uncertainly Hope Religiosity Transcendence Positive Change Quality of Life Principles and practice of palliative care & supportive oncology 4th ed, 2013

34. Caregiver’s most common worsened health effects as a result of caregiving (72) Energy and sleep 87% Stress and/or panic attacks 70% Pain and aching 60% Depression 52% Headaches 41% Weight gain/loss 38% Principles and practice of palliative care & supportive oncology 4th ed, 2013

35. Family Meeting

36. F amily M eeting Determine the goals and benefits of the meeting with the patient’s family Set the time and place for the family meeting Specific documents should be prepared before the meeting Follow the applicable family meeting standards

37. Pr e-meeting with F amily Identify and invite family members and friends related to the patient Review medical records and target of care Identify conflict potentials Discuss matters to get consensus Determine the leader Identify the spokesman Emphasize on empathetic active listening

38. The process of death Discussing about death Where to die UNDERSTANDING THE DEFINITION OF DEATH

39. CONCLUSION Through palliative care, we change the role of a patient into a whole human being. Through palliative care, we transform the stages leading to death into times filled with life.

40. The role of palliative care in the society is very applicable at the family level, and also at the local healthcare level The execution of palliative care in the society is not an easy thing, except when it is done with care and precision. Palliative care in the society ha s an integral part of patient care as a whole CONCLUSION ...

41. Thank You